Hi all, I’m new here and hoping someone might be able to help.
I was diagnosed with hypothyroidism about 4 years ago and steadily taking 75mcg of levothyroxine, which helped. However over the last year or two I have developed issues with my bowel - lower right abdo pain and a lot of mucus in stools and fatigue has returned and is very bad. These flare ups are also accompanied by cystic acne on jawline and nasty skin abscesses on my buttocks (sorry about tmi!!!). Stool tests showed raised calprotectin and I was sent to gastroenterology where I had colonoscopy that showed microscopic colitis. I was given anti-inflammatories for this and ticked along for a few months before being hit by the worst flare up yet. My calprotectin levels were almost 2000 and they should be under 50!!! Was sent for urgent colonoscopy and NOTHING! And had a dismissive locum gastroenterologist because my regular doctor who is very helpful was on annual leave. He didn’t even take biopsies and told me I had IBS. Well you don’t get high calprotectin levels with IBS...
Anyway I’m sorry to moan on but by actual question is can thyroid problems cause raised calprotectin and inflammation in other parts of the body or is this something unrelated? I’m getting quite depressed about all of this.
Thank you
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Purpleberries
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First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Have you had vitamin and antibodies tested?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
I had microscopic colitis, it was effectively treated with budesonide which is a locally acting glucocorticoid, the capsules are called Budenofalk. It is expensive so they may be reluctant to prescribe. This may be what you tried.
It could well be IBS, mucus in stools is very typical of IBS. I don't know anything about calprotectin.
I've read that elevated levels of calprotectin are associated with inflammation-based IBDs such as Crohn's and Ulcerative Colitis, but are absent in IBS, thus aiding diagnosis of the former and exclusion of the latter (and avoiding the unnecessary invasive colonoscopy-type investigations for IBS which can be ruled out in the absence of raised calprotectin).
Thanks, perhaps microscopic colitis causes elevated calprotectin also. As around 15% of the population has IBS (more common in females) there is plenty of scope for patients with microscopic colitis to have IBS also.
Gosh you have been through it Purpleberries! Not sure what calprotectin levels are??
I was told I had IBS over 30 years ago. They took a poo sample and said there was bacteria in it. That was it, basically get on with it (ha ha), so whenever I had a flare up, I just put it down to that. I tend to have upset tums etc, when I am stressed or anxious.
Anyway, many moons later and purely by chance, due to a CT scan, for a gyne problem, I have now been told I have Diverticular. It was a "by the way moment and nothing to worry about, a sign of getting older!" Evidently I also have a ventral hernia, which I suspect I have had numerous years.
I also have had bleeding, they kept saying it was a infected haemorrhoid! But not the case, it was a gyne problem, which was not diagnosed in time and ended up with sepsis (another story). But the first scan I had, nothing showed up. Still not convinced I have this diverticular, as I don't have the symptoms as some people have or the problems. But occasionally, I still have blood and mucus, which does happen with Diverticular and other gut problems.
What I have been told and read somewhere, is that if we have thyroid conditions, we are more prone to soft tissue issues, especially in the gut?? I know from a group I am in, that a lot of people with my condition, also have vitamin D deficiency as well and some have thyroid conditions.
I would take the advice already given and get some blood tests done. Unfortunately I have the lot, Underactive thyroid since birth, B12 deficiency and PA, was also iron anaemic, but not now and vitiamin D deficiency. You are on quite a low dose of thyroid meds, so they need to be checked.
Just in case anyone needs to know calprotectin levels are usually found in stool samples- think it's the level of occult (hidden) blood found within this. I only know as I had a test done for this myself about a year ago. I had a period of passing bright orange mucus with a lot of diarrhea and abdo pain - also had a colonoscopy which showed nothing. Still have problems time to time - and I am not being treated for anything at the moment. I originally thought I was having a type of dumping syndrome thing going on due to reflux op - but am coming to realise there's a good chance it is thyroid linked.
Thanks for the information, I did not know that. But interesting to know. I always worried about blood in stools etc as my cousin found out by chance, she had stage 2 bowel cancer, she is ok but still worrying. It was only found due to a poo sample.
What I didn't realise until this test was done was that there is never a zero level - We do pass some blood in our poo - but not at high levels. If you are still worried go back to your GP - it could be you are eating something that is really not agreeing with you (highly processed food in my case) I would think anything really worrying would have shown up in your colonoscopy .
I have had scans and nothing has showed up. They were going to fast track me last year, but I had no markers to indicate anything naughty and nothing showed up as I said. But when you hear something in the family, it makes me worry, which makes me anxious.
Needless to say, everything is back to normal now anyway.
Sorry for not explaining - Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs. It should be below 50µg/g in patients with IBS and my readings have ranged from 300 to 2000! So there is something that is not right!
Sorry to hear about your problems JOLLYDOLLY, but glad to hear things are back to normal for you. Sounds like I will just need to keep pressing as I am not accepting inflammation that high is something to be tolerated and ignored!
Jimh111 - calprotectin can indeed be present in microscopic colitis, but no higher than 50 for people with IBS. So you might be right, could be both microscopic colitis and ibs. Glad to hear the drugs sorted it out for you in the end.
Sounds like there is some kind of link to hypothyroidism and will be mentioning it to my gp in my thyroid blood review this coming week.
I have Hashimoto’s hypothyroidism and I’ve been having diarrhea since the first of the year, which I thought was caused by being on 2 new thyroid meds in about 4 months time, I couldn’t take them, Dr. put me back on previous 88mcg T4 and the diarrhea still continued, had a colonoscopy last week, found out that I too have Microscopic Colitis. I just got a book from Amazon, Revised Edition, Microscopic Colitis by Wayne Peskey, he says there is a correlation between M.C. and thyroid disorders, he says and my Dr. agrees that diet change should be the first starting point, that most people with M. C. are gluten and dairy sensitive so that is going to be my starting point and then we have to find out our other food sensitivities and eliminate them and that diet alone brought remission for roughly 60 to 70% of them who try it and that the remission rate can be extended to 95% with the diet changes in combination with budesonide or a 5-ASA medication in cases where diet alone aren’t sufficient to bring remission. I’m going to start with eliminating dairy and gluten and go from there. It says in the book that there is a lab in Dallas which I’m in Texas but not anywhere near it that’s called Entero Labs that offers stool tests that can be used to reliably detect the most common food sensitivities, more accurate and reliable than blood and skin tests, this lab appears to offer the only reliable and accurate stool tests for food sensitivities in the world. Dr.Fine is the Dr. that owns the lab, he also has Microscopic Colitis and if you google his name he has a lot of research papers out on it and IBS and IBD. I’ll be checking with my insurance to see if they would pay for that test, if not I’ll see what the cash price is and hopefully I won’t have to mortgage my house 😂to pay for it. I highly recommend that book. Good luck to you, I hope yours goes and stays in remission. People that don’t have a bowel disease like this don’t have any idea how life altering it is, and not in a good way!
Can really sympathise with you Debtex and thank you for the information. I will definitely be looking this up! Hope the dietary changes work for you. Please let us know how you get on.
Hi Purpleberries: I can't comment on the digestive problems because (thankfully) no experience there. I did have a problem with a painful sebaceous cyst that grew within my pubic hair. Doctor would lance it (excruciating) and then it would grow back. Finally I did my own research and learned that turmeric is good for skin conditions. I began taking a capsule containing turmeric and bromelain. Bromelain is also good for reducing inflammation. The cyst stopped growing back, and I have never stopped taking the supplement.
HI Purpleberries, I changed from dairy milk to rice milk and started eating gluten-free bread. although not fanatical I try to keep to this regime and it had a positive result in several areas. Mainly no longer required iron injection ( not given now, so gives you an idea of how long ago i started) and helped with snoring an sinus problems. I try different things to help myself as long as no side effects and it doesn’t break the bank. Good luck
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